The Real and Unreal: Struggles With Schizophrenia

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I have been applying for jobs that I think I would be able to do for the past year. One of the things about me is I always want to contribute. I worked up until five years ago. Since that time I have been trying to take classes and become retrained as a writer so I can build a freelancing career. I even went to culinary school and graduate school but couldn’t (for different reasons) keep up with either one.

On days when I can seriously self-reflect, I know that a freelance career or a work from home opportunity is all I can manage. In the morning, after I take my medications I frequently become so groggy and tired that I need to crawl back into bed and sleep for thirty minutes to an hour. There are days when I call my husband and ask him to come home from work. It is a good thing that he works so hard and has a good relationship with his boss.

One of the things I try to do to build a freelancing career is attend writing conferences and network with editors. I try to build these relationships on social media as well. My husband always goes to the conferences with me, and it is a good thing because we haven’t been to a single one where I didn’t run into problems with my symptoms.

If I made an appointment with you at ten in the morning to meet at Starbucks, you probably wouldn’t realize that I have schizophrenia (that is if I didn’t have to cancel or wasn’t experiencing anxiety).  Many people see me for short periods of time and don’t realize that I have a severe mental illness. I am capable of having a conversation, and I laugh a lot when people possess a sense of humor.

One reason my illness isn’t always easy to detect (with the exception of anxiety and paranoia) is because I have been practicing hiding it for over twenty years. I don’t like people to see my symptoms.

The strange thing I am trying to express by writing all of this is that I have a desire to be well. I think I am capable of more than I am. I have a desire not to have schizophrenia. I think I have an illusion (delusion) of myself at times that convinces me that I don’t have schizophrenia at all even though I am always adamant about taking my medications (a constant reminder that I am ill).

It is hard to describe having clear enough thoughts to write these essays or to write anything, but in the same day be so paranoid that I need my husband to come home from work to help me. Those two worlds, my healthy world, and my symptom-filled world, don’t sit well side by side. The side of me that writes these essays thinks that I can achieve anything, and all I need to do is try hard enough or get the right breaks. The mentally ill part of me requires more medication, help from my husband or others, and keeps me from really being successful at anything (because no matter what I think I can do, I can’t control the daily symptoms).

I guess that is my brand of schizophrenia in a nutshell – a woman full of possibilities and ideas that she can’t reasonably achieve because her symptoms pop up unexpectedly and demand all the attention.

It is hard to admit that you are limited in your potential. It is hard to admit that the very part of your body that occasionally creates original and interesting sentences can turn into your enemy.

I don’t feel sorry for myself, but acceptance is a life-long process and one where I feel my progress is not linear but more like forward and backward and off the path all together like when I apply for a job that there is no way in the world I would be able to handle. Is that hope? Is that delusion? Is that magical thinking? Is that over-confidence, or is that the result of schizophrenia and the reality of my illness playing hide and seek with me?

It’s hard to have a disease of the brain because even in healthy people the brain can play tricks on you, and in mentally ill people you can’t always tell the tricks from reality it’s like watching a magic show by a master magician.

A Tiny Tale of Wonder

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So many people say they have magic or synchronicity or coincidence in their life. Maybe they mention fairy dust or mermaids. I call it all God. All those wonderful moments when you know the currents of electricity or the moon or tides or whatever have aligned in your favor and everything works out. It’s a mystery; those moments, those miracles are God for me, magic for you, amazing for all.

I had a writing mentor, but he passed away a year ago last April. I was heartbroken by the loss. He was a very successful writer and poet and extremely well loved. He was the first writer that I had met that believed in my work since I had returned to writing after a twenty-year hiatus. (The story of why I didn’t write all those years is sad, and I think I have shared it here on more than one occasion).

Steve not only told me what he didn’t like about my work; he told me what he thought was good about it. He wrote essays for me to get into graduate school to study poetry (and I got into both of the schools that received his essays). I knew that he was serious about what he said about my writing because he published some of my poetry in two different publications where he worked as an editor.

Sometime after Steve’s death, I hired a writing coach to help me write my memoir. I worked with the coach for many months before deciding I wasn’t ready or didn’t want to write my memoir. I have a serious problem with motivation which is a symptom of schizophrenia that gets harder to live with over the years. I stopped scheduling appointments with my coach.

I missed having the support of a mentor, an editor, a cheerleader and a friend.

On the one year anniversary of Steve’s death, I was at AWP16, the largest writing conference in the United States. Before attending the conference, I found out that a writer who I had traveled to Flagstaff Arizona to see (at another writer’s conference), was auctioning off a package of her writing services for a year. I looked at the schedule, and there were two other things I wanted to attend (actually, I needed to attend) booked at the same time as the party where the auction was scheduled. I was devastated, but then I discovered that I could bid in advance and not be required to attend the party.

My husband and I talked about how much we could afford to pay for me to work with this writer for a year. We decided to put the absolute highest amount we thought we could afford so that I would have a better chance at winning the auction. (At that time, I didn’t know that I could contact this writer and work with her. I thought the auction was my only chance).

The day of the auction I ran into a poetry professor who knew Steve and knew how much he meant to me. I told this professor that I had tried but been unable to find someone who filled those holes and gave direction to my writing life. Tears welled up in my eyes, and I felt the tremendous loss of such an advocate, teacher, mentor, and friend.

It was the day after the anniversary of Steve’s death when I was sitting in a disability panel as a representative of writers with a mental illness when I got the text. Mine was the winning bid at the auction. I nearly screamed out my excitement in that auditorium. I let my hands go over my head and pumped the air above.

Elizabeth Gilbert wrote a book, Big Magic; the book is about living a creative life. She writes a lot about those moments, those incidents when everything in the universe seems to be working toward a single goal that manifests itself before you, or in you, or around you.

I still miss Steve every time I write a new essay, or have an article published, but I believe in an afterlife and the continuation of spirit and energy. And I think he would have delighted in the fact that Anna and I connected. In fact, I think he arranged it.

 

Atheists and Me

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I don’t usually talk about my faith or politics here. I have strong feelings about both, but this blog has never been about that. So, if you are uninterested in issues of faith, then skip my latest article on Patheos: No Matter How Smart They Think They Are, Atheists Don’t Shake My Faith.   If you have an interest, pop over there and let me know what you think – either way, I hope you are healthy in body and mind.

Not One of Us but All of Us

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Yesterday while I was on Facebook, a picture of a man dressed all in tinfoil popped up in my newsfeed. Above the picture a friend of mine wrote, “There sure is a huge population of unmedicated paranoid schizophrenics in this world–sadly, with the Internet, and social media, they now feed each others’ delusions. Maybe I’m just paranoid?”

When I first saw this post, it stung. The man who wrote the post is gay, and common sense would say that a person who belongs to a stigmatized and oppressed group would have sympathy and empathy for another group of people who face some of the same challenges.

In the black community, some people use the word “woke” or “staywoke” to mean being aware of the issues in the community. The word or phrase has recently become popular across the Internet and with teenagers. Although the original meaning had to do with racial issues, it has now morphed into meaning staying aware of social issues. An interesting progression of the use of the word or phrase is in Fusion.

I don’t think that I am “woke” about all social issues. I don’t always catch a racist situation on television or in other media. I am not the person who can point to every gender stereotype in a movie or book. I’m not always up to date on the issues that still put the LGBTQ community at risk of discrimination. The point is I try, though. I care about all people and their civil rights and their right to live and shop and be safe without harassment. I believe in liberty and justice for all.

How do I try? I listen. I read. I read books from people who are a part of these oppressed communities. I actively seek friends on social media that have different experiences than I do. I watch what they post. I read articles that are important to them. I try to become increasingly more educated, sensitive and aware.

I am not perfect, and I don’t expect anyone else to be perfect. I ask for patience from the people who belong to communities where I don’t yet know all of the correct language or all of the meaningful events happening that directly affect them. I am slow, but I am trying.

What I want to ask people from these various communities, and groups is, are you giving equal effort to others who face discrimination that you hope people give to you?

If you only care about the issues that affect you personally, don’t attack those who don’t care about the injustices you face, because that is hypocritical.  It’s all of us or none of us.

I would love to earn the badge of “woke” by a community I stand up for and stand beside but am not necessarily a member. I would love to give out the badge of “woke” to people who get it about mental illnesses and champion our cause.  Some of you are on my list of recipients. I hope more people will want to earn that honor.

  • Update: The person who posted the offensive comment and picture on Facebook has made a very public and formal apology. One more person, one more step closer to being woke. We can all help change the world one heart and mind at a time. Ready? GO!

Can Something as Simple as Cupcakes and Humor Hold a Marriage Together Under The Pressure of Incredible Odds?

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My husband suffers so much disappointment due to my illness, but he would never say that, or even show it. I know and can see that it is true, though. When we first met, I would drive from Seattle to Los Angeles by myself to visit him. I haven’t driven a car in the last eight months. My husband and friends drive, or I take the bus or walk whenever I have to go out.

Cupcakes and humor.

When we first started dating, I would fly (even overseas) by myself. Now, when we travel we have to plan the trip around certain times of day (less anxiety), and we have to pack and prepare in ways to try to make the trip as pleasant and as smooth as possible. I almost always am overcome by anxiety at some point in every trip (usually at the airport and on the airplane).

Cupcakes and humor.

I was once so independent compared to how I am now. I was once so social and active. Now, we spend a lot of energy to make sure that my life is as stress-free as possible to keep symptoms at a minimum. I stay at home and have very little stress or interactions during the day. I even limit what I post on social media to avoid confrontation with others (stress).

Cupcakes and humor.

I know my husband would enjoy socializing more, but I will rarely agree to go with him (isolating socially is a real symptom of schizophrenia and one that has increased in me every year). There is so much my husband enjoys that he has given up to help provide me with the kind of environment I need to give me the most symptom-free existence.

Cupcakes and humor.

For all the sacrifices my husband makes, I try to be a supportive partner when I can. Once a month my husband asks me to make cupcakes because he has taken it upon himself to celebrate the birthdays of everyone in his office. My husband reminds me on the last Monday of every month, “If you feel up to it tomorrow, can you please make cupcakes?” It wouldn’t matter if I were suffering from my worst symptoms I would try not to let him down by having the kitchen counter free of the little cakes that help him lift the morale of his coworkers. It is so little to ask of me. In the past six years, I have never once let him down.

Cupcakes and humor.

When I am comfortable, I make up random songs and sing them constantly. I am a terrible dancer, but I love to shake a little booty with absolutely no sense of rhythm while walking from one room to the other in the house. I love to tell a lively story about anything and everything. To make this simple, I love to see my husband break into a belly laugh or at least a big smile, and no one can do that to him the way I can. So yes, it is the simple ingredients that hold even strained marriages together. May I suggest Cupcakes and humor?

Writing Beyond Our Illnesses

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A few months ago I wrote a piece for a non-profit organization about living with schizophrenia. In the piece, I said that I thought writing was an important therapeutic tool: writing can help you document your symptoms so you can easily share them with your doctor. Writing can also help you work through difficult times, difficult memories, and help you gain valuable insight into yourself and your diagnosis.

After writing about the benefits of a writing practice, I wrote that eventually, I think that to be healthy people need to stop writing solely about their illness. The editors asked me to take that part of the essay out, stating that their readers almost all use writing to document their illnesses, and they might take offense to my suggestion that one can and should move beyond that.

I’m not talking about never writing about schizophrenia again. I plan to write about it as ideas come to me, but I feel like writing other stories, stories about my grandmother, my siblings, my childhood, things that are happening in the world, all of these things can be a necessary progression to living a happier and more fulfilling life.

I think a lot about my writing and I am sure other people who write think a lot about their writing, too. If my thoughts are almost always swirling around about the symptoms of my illness, it is my belief that more and more of my life will be that illness. If on the other hand, I create a love story, write down memories from childhood, or of my grandparents, then I believe my life will become richer and fuller as those thoughts take over part of my day and part of my life.

As advocates for people with a mental illness we are often trying to show people that we are more than our illness; I know I say it, and write it all the time. I think we need to live that in our creative lives as well and I think our mental health will increase because of it.

I like to read about people’s experiences involving their mental illnesses, but I also like to read about the type of flowers they like, their dream car, and whatever other things they care for or love. I even like to read fictional stories that they created out of their imaginations. This type of writing does a tremendous amount to normalize those of us living with a psychiatric diagnosis, and it also means we are thinking outside of our illness, and I think that is a sign of health and can lead to an experience of more happiness.

Happiness is not rare, but it isn’t always easy.

 

 

 

 

Being A Rock and Needing A Rock: The Two Sides to my Mental Illness

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(If you have been reading my blog for a while, you know that I don’t feel sorry for myself. I frequently write about the beauty I find and see in life even though I battle with a severe mental illness. I don’t want people to think that my illness does not impact my life, though. It would not be accurate or truthful to say that living with schizophrenia is easy. For me, and many others, it is not. Yesterday I posted something that was 100% positive so I thought I would give a little glimpse into the struggles that some of us with schizophrenia go through as well. I am not complaining. This essay reveals another side to living with mental illness).

I’m not always sick or experiencing symptoms of my illness. There are hours, and when I am lucky, whole days, where my symptoms are not present and I am just an average woman going about my life. During these asymptomatic times, I simply don’t stand out.

Forty-one days ago my husband’s aunt was moved into hospice. We immediately drove to Los Angeles hoping to beat the march of death and tell her good-bye. We were able to be with her, and her immediate family for eleven hours in the hospital. I was able to share memories, comfort her daughters and enjoy the company of extended family during a difficult, sad, stressful and solemn time. I managed the whole day with calm, serenity, strength and grace. I was able to say good-bye to someone I cared about without worrying at all about schizophrenia.

A few days later, we went back to Los Angeles for my husband’s aunt’s funeral. When we walked into the chapel, anxiety overwhelmed me. I couldn’t sit still. I went downstairs to the bathroom. I walked back up and sat in a pew. I walked outside. I could not get comfortable. I told my husband I was struggling. After a half hour of him trying to help me overcome my symptoms, my husband said, “You need to take some more medication today.” I did so willingly because I knew that he was right.

My husband and I spent the ceremony in the car trying to relieve my symptoms. When it came time to move to the graveside for the burial, I tried to join the other people mourning. I walked downhill and stood near the casket. I couldn’t stay, though. After a few minutes, I made my way back to the car. I climbed into the back seat and tried to nap (usually a higher dose of my medication will put me to sleep for a while). Before I knew it, my husband was in the car, and we were on our way to having dinner with a large group of family and friends.

I thought sleeping would help and that my symptoms would be gone but they weren’t. I was hoping that some food would calm me down. At the restaurant, I ate as much as I could. I still felt shaky and anxious. My niece asked me to go shopping with her. We went shopping and stopped by Starbucks. By the time we returned, most people were saying their good-byes.

It wasn’t until we got in the car and started to drive home that my symptoms finally subsided. I said to my husband, who had been so helpful to me all day, “I am fine now.”

There are times when I can be the support that my loved ones need and there are times when I need their support to enable me to get through a day with schizophrenia. For me, the illness is unpredictable, and that means I have to accept my weaknesses when they are present and stand firm in my strength when I have a full supply.

The Secret to Writing

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For hours I read the descriptions for writing classes. I look at UCLA Extension classes. I look at Gotham Writing Workshop. I look at the offerings of the non-profit writing organization in my city. I spend hours searching for online writing classes and writing groups in my area. I attend as many writing workshops as I can afford. I am searching. I am looking for discipline. I am looking for a magic pill or bullet that will keep me in my chair every day writing essays, prose poems, blog posts, articles. There must be a trick to being productive. It doesn’t help that on Facebook I am friends with a wide network of writers. Those writers report their daily word count: 2500, 3000, sometimes more. I feel inadequate. I feel like a failure. I hire a writing coach.

I have to accept that I am looking for shortcuts. I am looking for a guru with the answers to being a writer, but no such guru exists. The only true guru would tell me this one word, “write.”  That’s it. I realize today as I am typing this that my problem is not that I need one more class, another critique, the input of one more teacher, assignments, encouragement, one more syllabus, or to participate in another workshop.

I need to sit down and do the work. I need to open a document and begin to type. I have been looking for something magical or mystical, some easy way out. There is no easy way out. It is just me, my thoughts, my hopes, my dreams, my words on a page that I either send into the world, or I don’t.

The time of reckoning is here: I either want to be a writer or I don’t. I either take this lonely step, or I give it up altogether. I think of all the money I have spent on advice. I think of all the time I have spent in classes. I think of how I was searching for someone to do the work for me. It doesn’t work that way. I need the determination. I need the motivation. I need to sit down and get down to business, the business of putting words on a page.

I have always believed that everyone has a book inside of them. I frequently meet people who tell me they are going to write theirs. I wish them well, I do, but this business of putting ideas on the page every day is not for everyone. It is both a pleasure and hard work. The words don’t always flow. The ideas don’t always make sense when you try to type them out. Not every piece is artistic or amazing.

I lost the ability to write for many years because I couldn’t focus while on my medication. I never want to lose that ability again. I don’t take this gift of time and the gift of desire for granted, but I have been looking for shortcuts and the path that has already been cleared for a few years now. It’s time to take out my machete, and start hacking away at the obstacles. No one can do it for me. I’m out in the jungle and the options are, move forward or stand still and perish without water.

I sat in my chair today, and I wrote. I wrote these words. I cleared the path a little bit. I took a step forward. Tomorrow, I hope I can make a little more progress, and after that, a few steps into the jungle each day.

It is work this writing, and although it is the best life I can imagine, I need to stop searching. If you want to write a book or make a living as a writer, you can pack your bags and begin to search for the best way to do that. But when you return home, you will find your computer waiting, and if you are lucky, there will be a sticky note on it that says that one word, “write.” And you will discover that you already had everything you needed before you left on your journey. That’s it. That’s all there is to it, “write.”

It’s so much harder than it sounds, you’ll break a sweat again and again, but that’s the secret, and it’s up to you to somehow find a way to turn it into magic one word at a time.